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29 June 2011

Well, I guess this door is closed as an option. Even though it wasn't at the top of our list for taking Liam due to cost, it was still on the list.

Inquiry Form
Dear Sir or Madam,

as you may have noticed, Cologne-based XCell-Center GmbH with branches in Cologne and Duesseldorf filed for insolvency. As of 24.05.2011 I have been appointed as a preliminary insolvency administrator by the court having jurisdiction.

At the moment, business operations have been shut down, as the competent german advisory authority has denied further authorization for stem cell transplantation.
The insolvency proceedings will probably open in August 2011. Every creditor will get an invitation to lodge a claim and further information by our office.

I kindly ask for your understanding, that - due to the german insolvency law - it is not possible to lodge a claim before.

27 June 2011

We have some decisions weighing heavy on us right now that we could use prayer for. I am going to be one of those people that ask if you could say a prayer for us but not give you all the details about it for now. God knows though. And we would sincerely appreciate your prayers.

We specifically ask for clear direction, clearly closed doors, and wide open windows as we seek God's wisdom.

16 June 2011

We all have scars. Some we carry quite obviously, from an accident, an injury. Some are internal and not so apparent. Traces of them visible but not noticed without attention being called. Some blend in so well no one would ever know it was there.

Liam has scars.

He has a large scar running along the bottom of his left scapula. The wound from a surgery to correct a duct that didn't know to close at 23 weeks gestation in order for Liam to get enough oxygen (even his duct knew it was way too soon).

He also has small scars. Lots of tiny pin pricks all over his body. One from his PICC line in his left arm, his arterial line in his right, little white spots on his legs, hands, and feet from the IV's. Pricks on his heels when his art line went out. I can see every one. They aren't noticeable to anyone but me.

He also has internal scars. Ones I can't see, but I know are there. Scars with a lasting affect of trouble. He has a large portion of his cerebellum missing. He has a thin corpus collosum. He has had laser beams scar his retinas in order to prevent losing them due to his prematurity. He has scars of trouble from sensory issues involving his mouth and his tummy.

I have a lot of scars as well. Most of them no one can see. Wounds grevious yet assuaged with the passage of time. Only obvious to me.

But, one scar I wished was on the outside.

One scar I wanted to never fade..

I wanted a permanent marker for this scar. An identifier.

But in fear of the passage of time allowing my wounds to fade from my existence, I wanted to make a mark that would never fade, that would always remind me. I wanted a tangible one. One I could touch and be transported. An indellible reminder. One that would never disappear.

God said to Zion: "Behold, I have engraved you on the palms of my hands." Isiah 49:16

I wanted my missing children to be engraved upon my hands as well. And so I thought about what I would have that scar illustrate if I did. What I would have it represent to me. What it would mean to be there and to see everyday. But I didn't just want my missing children to be honored, I wanted to signify all of them and each ones importance to me.

So, I decided for it to simply say:

"Mom of six"
in Irish Gaelic.

They have now in their own way been engraved upon my wrist. An outward symbol of an internal scar, one that can never be forgotten.

While being a Christian and receiving a tattoo can be questioned by some and while impressions, stigma's and misrepresentations can occur because of having one, it illustrates for me the reality of engraving my children upon my wrists as the Lord did with Zion. While they are not here with me physically, they are here with me in the Lord's promise that they are not forgotten.

14 June 2011

We are finally, officially at the halfway mark for the goal set to take Liam for stem cells!

We hit $4,000!

Friends who had already donated before and have done other things behind the scenes that they didn't want credit for, donated again and got us to this goal! We have been so blessed by this couple and their faith, their generousness and their example.

We set the goal of $8,000 because the actual stem cells will cost $6,000 in advance. But then we have the plane tickets, hotel, and travel necessities for taking Liam. I am nervous about how it will work traveling with him. He has to have his own seat on the place even though he can't hold up his head (for takeoff and landing) and I know his car seat won't fit in it. We will have to take a stroller and the car seat. And then he's on a special diet so we will have to worry about getting his food there too. It's a lot to deal with and if ya'll knew how nervous this whole process makes me feel...well, it isn't something that is being taken lightly. But it is something that I have felt we need to do to help Liam. We've prayed about it and felt the Lord leading us in this direction. He's put people in our path with the experience, knowledge, and love of kids with special needs to prepare us for this step. Getting my mind wrapped around it and then getting me humbled to ask for help, putting generous, faith-filled, loving people in Liam's circle have all been important steps that God has taken care of along the way.

We are faithfully praying for the last half, the largest hurdle, to still be provided. And we are still praying for healing for Liam that only God can do.

Romans 8:28 And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

Matthew 4:24 And his fame went throughout all Syria: and they brought to him all sick people that were taken with divers diseases and torments, and those which were possessed with devils, and those which were lunatic, and those that had the palsy; and he healed them.

Psalm 33:22 May your limitless love be with us Lord as we put our faith in you.

Thank you to everyone who has helped out so far. From the big to the small, you all have played an integral part in getting Liam help and we appreciate you all.

09 June 2011

In a recent Pew Research poll, 56% of Americans said it is more important to conduct stem cell research that may lead to new medical cures than to avoid destroying human embryos during the research. But several ethical alternatives to embryonic stem cell research that hold great promise are available.

Here's a great article that talks more about the differences in stem cells. Embryonic is not the way to go and I'm disappointed that our federal government overturned the ban on embryonic research in April because it will focus federal dollars in that area when adult stem cells are the way to go both ethically and scientifically.

07 June 2011

We are still trying to raise the money to get Liam treatment for his CP. I swear this will be a curable disease someday! Just google TBI and stem cells. It's a fascinating field and one with so much promise! But because stem cell trials have not been established, regulated, and approved yet here in the US, we must take Liam out of the country if we are to try and help him while he is young.

Please know that I am so very grateful for everyone who has donated and I'm not trying to guilt trip anyone into helping Liam out. From the $10 donations to the hundreds, I say over and over that we can't do this with out you. And you all have been amazing. We've almost raised $4000, HALF of what we need to go!! I'm so impressed by your generosity and the tugging you've felt in your heart to give. I'm just so blessed and frankly thought that we wouldn't get as far as we have. God's sure shown me what a cynic I am.

In case any of you are wondering how we are going to come up with the rest, well...we are still fundraising! We have already sold flower bulbs, had an amazing volleyball tourney, and have sold almost all of the first shipment of tees (we only have a couple of large and x-large left). We've also had an incredible friend, Gregasauraus, bake goodies to sell at his work that helped to bring in several hundred dollars! And we've had various straight up donations to the blog.

I've been brainstorming trying to think what to do next and have a few ideas:

You can donate any gift cards you have lying around (no matter the balance) and we can auction them off here on the blog.

Find out if any business in your area would be willing to put a change jar up. Ask if you could take up a change collection at your church, sunday school class, small group, business, neighborhood, etc... Spare change goes a loooong way!

You can post Liam's blog link to your facebook page, your blog, your forehead, send it to all your famly, duct tape it on your car...anywhere it can get the word out. I've received donations from complete strangers; you have absolutely no idea when God will tug on someone's heart.

Donate your leftover paypal balance.

Have a garage sale, lemonade stand, Avon party, Pampered Chef party, etc... with a percentage or set amount to go to Liam.

Keep an eye our for a great raffle/giveaway on the blog in the next few weeks!

These are just a few suggestions that I've pondered...
If you've already donated, please know we are thankful. I love all of you. And if you haven't donated, please think about how you might be able to help in any way. And, if you don't, I still love ya all!

Just think how far we've come in the last 12 weeks: from zero to $4000!

03 June 2011

Liam has a very hard time getting his arms under control. He has enough fortitude to get his arms down when it comes to his iPad, but for the most part it's a battle to get his arms down near the tray to play with any toys for any length of time.

Our vision teacher had been at a conference and saw some pictures of children in school with their arms 'tied' down. She asked them what was going on with those kids and why they were tied to their trays.

It turns out they were tied to the tray to keep their arms in place.

Hmmmm. She immediately thought of Liam.

So, with some panty hose and two holes drilled into his tray, we have:

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.